Chris, glad you made it home ok and that the freeze we have been having did not cause body parts to fall off! I am certain that if you had had your porrdge like a good boy the cold would not have troubled you (I seem to be the opposite as I avoid kippers like the plague!). With all your travelling, wives and children maybe the MDS was just natures way of slowing you down to a normal pace!! Glad your blood results are holding steady long may it continue.

Rachael welcome!
I have been diagnosed for two years now and although my blood levels (particularly white blood count and neutrophils) were at rock bottom for a good period of this they have begun to stabilise at a more acceptable level. Also my fatigue has reduced significantly. For me it would appear that I was repeatedly suffering viral attacks and then suffering post viral fatigue this lead to chronic fatigue syndrome which took 18 months to really shift. Now as long as I am careful after any illness and don't just rush into things once I feel better then I seem to be keeping my numbers a bit higher. I discovered that the horrible fatigue and symtoms I was suffering from were mostly related to post viral fatigue rather than MDS and most times I hadn't even noticed the virus that led to the fatigue! Not sure if that makes sense (it does in my head).

Mike your post is most timely as I had just been reading of favourable results in the under 50s. Think you may have the site record for youngest at diagnosis.

Birdmom can you imagine how bad Chris would be without you to keep him in check...the mind boggles.

As for the numbers, it's nice to have a long term aspiration so I'm holding out for 1000!

Anyway must dash. I will 'speak' to you all again soon.

as they say in Scotland Aw ra best

Ally

Ally, that's interesting about viral infections causing so much fatigue for you. It took 4 months for me to get rid of bronchitis this time, & that's with an antibiotic about halfway thru. At any rate, I'm happy to hear that you're stabilizing on a higher plane.

That'll be the day--when I can keep our Christopher "in check." But then, who would want a tame Chris?

Aren't we expecting results of some recent blood tests for several folks?

My next appointment is on Wednesday. Not sure what to expect. Sometimes I feel lousy, but I'm not sure if its the MDS. I seem to get tired after lunch when I'm at work, but by the time I get home I feel fine. Maybe its the job!

Good new from Lou & Gayle.

Last month Lou's hemoglobin was 9.6 and now, 4 weeks later, it has risen to 10.1....with no change in treatment. His white count is down to 1.9 from 2.5 last month and his red is 2.68 with platelets at 208 (sorry Chris).

Thanks for the good wishes...it's amazing...Lou suddenly feels better knowing his numbers are again on the rise. :)

Hey everyone sorry it has taken so long to reply. Thread #356

Just to elaborate a little on my form of this lovely syndrome and to add something to the overall discussion. I am on SSDI and went out in 1999 working 6 yrs past DX. I was lucky to get SSDI on the first try and the examiner commented on how complete my application was. This should be a hint to those thinking of going out on Disability, cross your T's and dot your I's and give the examiner a complete application. This way there is no way to dismiss an application based on incomplete content.

I am going to Roswell park Cancer institute for another consult and to see if there exists any study trials i may be available for. I am sort of giving up on the Aranesp as a complete treatment because of the length of time i have been on this drug and the fact that I am at the maximum dosage ie., 500 mc g x 1 week. This worked to keep my HCT at the 28% range and keep my energy levels up. I have noticed after being off of the drug for the last 2 months that my energy level has dropped and i can tell that my Hct has dropped as well. I have been working with my Hematologist to see if we can get this drug on a part time basis. Just enough to keep my head above water while i wait for a study trial to begin. The Insurance company has been fighting my Doctors attempt to use Aranesp on a as needed basis and this is after I have been on this drug for 5 years.
I am a bulldog when it comes to dealing with issues that I am passionate about and when I see a injustice being committed, therefore, I am going to be a thorn in the side of the ins. company and I respectably submit that anyone on this tread and in this forum, do the same. I have often heard that the squeaky wheel gets attention. My suggestion to everyone-start squeaking. Do not give up the fight and do not take no for an answer. Insurance companies like to make you and your Doctors jump through hoops to justify spending money on you. Do everything you can to get what you need to stay alive (at a reasonable price) Do not let those greedy S.O.B's kill you. We will see what Roswell say's at the end of the week and keep my fingers crossed that the ins company will allow me to stay alive.
Hey Birdmom this is a pic of me at the age of 7. It kind of sums up my personality and attitude. This forum is difficult to follow because its general format.
Good luck everyone and take care.

Gayle, that's pretty good news, I think. Must be the spring sap rising, eh wot? Lou's platelet count is identical to mine, but his RBC & WBC are lower. And my hemoglobin is 0.5 higher.

Debbie, maybe it's not the job, but your lunch. One of the changes I've noticed recently has to do with food. I've always preferred 2-3 larger meals rather than the touted 5-6 small ones. I cut down my lunch recently because I noticed I didn't feel as good & was more tired after eating. Perhaps it's the burden on the blood to take care of digestion or elimination, but whaddaino? You might give it a try.

Mike (AKA Squeaky Wheel), you were getting Aranesp once a week? And here I was fussing about being tethered to getting my shots once every 3 weeks. Yikes!

So that's your 7-year-old self, huh? Nice tongue.

Christopher, where the heck are you? We worry when you don't post.

Sharon,
I reckon you are missing a thing or two, particularly my very long contribution Number 360, to which no one has replied or commented. It was, I must admit, a long one, and perhaps one of the problems with MDS is a loss of concentration, but Sharon, pray tell me, how can you get away without answering the point that you took your Father in Law on your honeymoon.? Maybe that is why you have never eaten kippers.????
Of course as an American, you cannot believe you can learn from other even greater nationalities.
So I awit your answers with trepidation, clammy hands, nervousness, worry, and can feel a splitting headache coming on, though that may have been caused by Judith hitting me over the head, when I wolf whistled at a very attractive girl. Old habits die hard.

Incidentally, en passant........Having a hell of a lot of trouble with bleeding nose. Yesterday it flowed for 6 or 7 hours, non stop. Ran out of cotton wool, and had to stick two fingers up..........
Christopher.

There may even have been another couple of pearls to throw to the swine!!!!!

I also found that I am bloated and out of breath if I eat a larger meal and try to "graze" throughout the day instead. It does seem to help until I don't snack and get so hungry that I eat too much during one meal. I fly back to MD Anderson for my appt. on Thursday and will see what my counts are. I think they are up due to my feeling half decent. Chris, you better not get Judith too angry or she might get a new picture of you to put on here. I can see you now with two fingers up your nose, although it would be much better if you were just goofing off and not trying to stop a nose bleed. I would put a picture on here if I could figure out how to do it....this new technology is getting the best of me at times. I'll call the grandkids to help me.
Susan

Chris, you are so right. I missed your novel, as it was at the end of one page & I punched the "latest" button. Sorry about that!

I've been thinking about your bloody nose. I suppose beans wouldn't do, but how about marshmallows?

Okay, you want to know why my father-in-law accompanied us on our honeymoon. It's the other way around. H & I were living in sin when his parents (mother) decided that they would pay for us to go with them on a Sitmar cruise in May 1975.

I had this horrid mental picture of my m-i-l saying to people, "And this is my dear son and his...shack job." We were planning to marry anyway after lasting for a year together, so I suggested that we wed on the cruise. We had to do it in port (at that time), so we had a small but great wedding with a dozen friends and family (my kids & ex attended). My 4-year-old daughter went around draining everyone's champagne glasses, I learned later, and my f-i-l followed me around the ship as we left port, refilling mine.

Epilogue: I had to go to bed & sleep it off.

So now you understand why I saw my f-i-l eating...ugh...kippers for breakfast.

Okay Chris....where are you? Don't tease us like this. And the rest of you all? I am still stable with my hemoglobin at 9.3. My other stuff is ok. How about you all?
Susan

Susan

For the good news I am still around in England, but have had for the last 2 weeks a lot of upper respiratory problems, sore throats and digestive problems. Given anti biotics, and some others pills, I am now beginning to recover but am exhausted. The situastion is quite ridiculous, as I am now taking 18 pills per day, plus some syrup. No wonder the digestive system is not in top order, no wonder I cannot eat much, the belly rattles with that load of pills, and I suffer from just feeling downright poorly.

But I am still alive....Hallelujah!

No doubt I will get through this, and as my counts have been reasonable recently, and the Haemo thinks "I am doing OK" I have just to write this stage off as a minor inconvenience, and not complain.
I am beginning to think of my 75th birthday on May 30th, and I have in mind a trip to South Aerica in June, where I have a lovely Haemo, who is young, very pretty and exceptionally competent, so putting myself in her hands for a period in Colombia will be a pleasure.

I would like to sleep better at night, and sleep less in the day, and be able to watch at least one TV programme without dropping off. But we old MDS buggers dont get given many choices.
So thanks be to God, I am still alive kicking and difficult.
Christopher.

Hi Everyone -

Chris - happy to hear that you're still with us. I think I speak for everyone when I say...you should post a quick note everyday! It will stop us from worrying needlessly when there are plenty of other things we could worry about - ha!

Everyday Lou asks me if you've posted anything and when I say no...he starts to worry. While I'd rather have him worrying about you and not himself...I guess I'd really rather he didn't worry at all...so post, post, post.

Even if you only just tell us about the weather you're having or the price of gas...the connection with you is reassuring to the group, so post, post, post.

Love & kisses - Lou & Gayle

Dear Gayle,

Oh you should not allow Lou to worry, I have always been as tough as old leather, and twice as useless. Feeling better now that the antibiotics have taken hold, and much more cheerful. Had the last two days travelling up and down to LOndon, which is a lot of driving, 70 miles each way, each day and today have a quiet day to myself which is always good for me, and a chance to catch up on paperwork, emails, deleting spam mail, smoking etc.
So all is well.
Please remember I was given 1.2 years in August 2008, and 3 to 6 months on 7th August 2009, but I am still here, so it does suggest that my determination is above average, as all the projections are on an average basis.

Que sera sera, what will be will be.!!!

The sun is shining today, Spring is on its way. Hooray!!!
Chrisjb.

Chris, I agree with Gayle. We do worry about you and love to see your posts. You have led such an interesting life and continue to do so, unlike a lot of us who are so spoiled here in the US. We are all somewhat living through you on this MDS journey and you continue to give us all hope. Don't think you are leaving us anytime soon. I think we will take this to a vote and the majority wins!!! I can't imagine going to Africa as this would be a dream come true. You have done so much that only some of us can dream so you are not allowed to feel too poorly as we need your constant travel updates. Where is Birdmom and the rest btw? Hmmm....

Dear Susan, Gayle, the Absent Birdmom, and everyone else in the MDS firmament.
Hello, good morning, its a sunny day, though rain is expected at the week-end.

I am feeling very bored. What shall I do.?
Judith is working Mondays, Tuesdays and Wednesdays teaching Spanish to a Russian girl (one of the kids I look after)and at Easter she will start working two or maybe three days a week, at Parham Park, an Elizabethan Country Estate with tons of History, which was built by Sir Thomas Palmer who was involved in the plot to put Lady Jane Grey on the Throne.

Yes I am bored, and will become even more bored. My son rang me from Australia this morning and suggested swimming every day. My daughter in Dubai, suggests I should go and see her for a week. I quite fancy going to Colombia, but the problem is that Judith will not really like it if I go away without her. Oh dear, I will have to make a decision, and sometimes these days decisions are hard to make, and if made are sometimes not very good decisions.
Can you catch MDS of the brain?? Does anybody know? Anyone looked it up on Wikipedia? If one cannot, then increasing old age is taking its toll, from what used to be a very active and clear brain.
Enough of that. I am well. We are going out. I will rent an old persons 4 wheeled scooter, and beat up the Town of Worthing, take a long run along the promenade, visit the whole length of the Pier, and scootle down the pedestrianised streets to the fury of all. But it will wake me up, give me some fresh air, cheer me up, and reactivate my brain. After that I fancy a massage, as does Judith, and a light lunch.
So cheerio all, till Friday.
Love
Christopher